RARE-X is a collaborative program for global data sharing and analysis to accelerate treatments for rare diseases. It is a program of Global Genes, a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE-X is piloting a series of demonstration projects, in partnership with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support researchers developing treatments for persons living with rare diseases.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, and other technology partners, which will support persons living with rare diseases in data collection, structuring, and responsible sharing; clinicians - in accelerating diagnosis and improving and tracking health outcomes; and researchers and biopharma, providing them with the data they need to identify, develop and track the impact of breakthrough treatments and cures.
Global Genes provides the RARE-X Data Collection Program at no cost to individuals, participating nonprofits, or the rare disease community.